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Hi

i was diagnosed with MS yesterday. I was expecting treatment and a discussion about where we would be going from here, but that was not to be the case. Basically i was told by the consultant that there was nothing to be done, ie “think on, look sharp!” . so it was a waste of time, just see the consultant every 6 months. Has anyonje else had the same experience, and what did you do about it?

Hi Andy, welcome to the forum.

You must be feeling a bit alone in the wilderness right now, a diagnosis takes some coming to terms with, and even if you knew it was coming, it’s still one hell of a blow.

Were you not referred to an MS Nurse? These guys are brilliant, they usually have a bit more time than the nuero for a reassuring chat. An appointment with mine is like meeting up with an old friend.

It does seem that each hospital/health authority does things slightly differently, but ‘Here’s your diagnosis, now get on with it’ seems rather abrupt. Even if you’re in remission there are treatments they could be discussing with you.

Maybe you should talk to someone at your local MS Society branch, they will quite likely be under the same neuro. If you click on the ‘Near Me’ link at the top of the page you can find contact details.

Take it easy, be kind yourself, and read this site and the MS Trust’s site for reliable information.

Ben

Hello Andy,

My neuro was a Swarmy Eyed, Spavined Brained Wassack as well. After my diagnosis I saw him leave the hospital grounds before we did. I found out later that he was despised by the whole MS community locally.

There’s plenty to be done. To start with;

What type of MS do you have?

Which tests did you have?

What are your symptoms? and,

Which symptom bothers you most?

I have no idea of the breadth of experience contributing to this forum but it’s huge. Put it this way, if this forum was a lager it would be Carlsberg.

Your round I believe.

Anthony

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Hi Anthony

thanks for the reply,i dont know what type of MS i have i will ask the doc tomorrow. I had an MRI then a lumbar puncture then a VEP eye test. the worst symptoms are the lack of balance and leg pains when i walk also a violent tremor in my right hand!

Andy

Hi Andy,

There is a choice of medications that help with pain and tremors; if one doesn’t suit then there are alternatives… As for balance that’s simply a case of getting used to it and adapting the way you move about.

I used to fall a lot because I was still walking the way I’ve always done. I haven’t had a fall for about two years, probably because I concentrated on my walking. Up 'til six years ago it was automatic.

Stay in touch, Andy. We really know how you feel.

And it’s still your round.

Anthony

thanks Anthony i saw a doc today who is getting the MS nurses on the case. She said that the consultant probably notified them but didnt say that to me

thanks again for the support and take care

Andy

Excellent.

MS Nurses are exceptional people.

Neurologists do the science but it tends to stop there. But Nurses are real people. Mine has been leading me gently by the hand for over six years. They understand what it’s like and have loads of advice about drugs, exercise, managing symptoms and they can translate a neurologist’s jargon in English.

But I think their real strength is their empathy. Which is what we need when presented with the biggest piece of news we’re ever going to get.

Anthony